I’m going to change things up a bit this year too. I like the 10-minute limit. I have been toying with the idea of writing a book about caregiving. I blew off NaNoWriMo though, and am at a bit of a loss regarding what to write (and frankly struggling with the courage to write anything).

Therefore, a (roughly) ten-minute list of what I am grateful for regarding the lessons learned from caregiving:

To set the scene, I am listening to the soundtrack from Sleepless in Seattle while writing this. It’s one of the things Dad wanted played at his visitation/funeral, according to his Five Wishes document. This always struck me as odd, but he did love movies and classic music, so it makes sense in retrospect. (We also only managed one of his wish list items (Claire de Lune (sp?)) at his funeral, so I guess I am making up for an item that didn’t get checked off his list.

That’s the thing about caregiving. The person at the center of it all is the subject of everyone else’s checklists and (at least in Dad’s case) has very little control over what happens to them.

To start the gratitude list then, I have to acknowledge the fact that it is an honor to be entrusted with a loved one’s wellbeing (and I’m not saying “honor” in the cliché way —- it’s as vital a responsibility as parenthood, being a spouse, or giving your all as an employee).

I, to be honest, am grateful for the opportunity to be at home for three years. I was mentally exhausted from my efforts to make peace with the degree to which I had become unmotivated at work and physically exhausted from my crazy sleep patterns as I tried to squeeze in freelance work. I may have said to many people “I have to be a caregiver,” and I did (barring some financial solution that would have enabled him to go to a facility coupled with our willingness to let him go to one), but I healed over the three difficult years in some ways. If nothing else, three years free of Monday Dread were worth all the hard work of caregiving.

I am grateful to know myself better (not that it’s all good). I have the academic training to be empathetic, organized, and deliberate in my approach to caring for someone (due to my degree in Child Development and Family Relations (okay, ONE class in elder issues but still …..) and my master’s in Counseling and Human Systems). About 95% of that went out the window, though, when it came to dealing with Dad (just like 95% of my child development knowledge went out the window dealing with my own kids).

It was really toward the end that I got better at setting limits and boundaries and not reacting to being baited (and I know he wasn’t baiting me on purpose — it was a dementia thing). I am also a pleaser by nature and it was so very frustrating that “pleasing” is really a bad approach to someone who is combative and irrational.

I am grateful to have learned that there are often more solutions than you think there are. I am grateful to have become more decisive. We went round and round hemming and hawing about whether to move Dad to Depends ….. until the night he stood in our hallway peeing on the carpet (again, not intentionally but it was what it was). I immediately made the decision we had been putting off.

Ditto the decision to switch him to non alcoholic beer. I guess maybe that wasn’t my decision but the whole situation pointed out how we had options we could have pursued earlier. It wasn’t until he had his emergency dental procedure and couldn’t have beer for 48 hours that we said “we’re going with non alcoholic beer for good now.” The funny thing is I had been knocking myself out to sneak N/A beer into his “real” beer when he wasn’t looking. I would wait until he went to the bathroom then do this weird sprint/scurry thing where I ran to the fridge, poured out part of the real beer, and replaced it with N/A. I was grateful to end my N/A scurry cycle, let’s put it that way.

I am grateful for the realization that humor and the end of life stage are not mutually exclusive, that sarcasm (private, venting to people who get it sarcasm) is not a sign that the patient is not loved (quite the opposite).

I am grateful that I was forced to be assertive over so many things — medical practitioners who didn’t take care of his needs (not that there weren’t some who were AMAZING) and home care people who lied to me (again, some were INCREDIBLE).

Most of all, I am grateful to have been given the opportunity to *try* to live up to the care my awesome mother-in-law would have expected me to give (the woman had high high standards!). I am grateful to have seen this stage of someone’s life. I think it will help me be more empathetic to others in the same situation in the future (and maybe do some advocacy).

On the left, the official funeral mass. On the right, his friend Dan sharing memories at Corner Pocket. Another day ending at his favorite place. 🙂